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Trust in Biobank Research: Meaning and Moral Significance
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2013 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

What role should trust have in biobank research? Is it a scarce resource to be cultivated, or does its moral significance lie elsewhere? How does it relate to the researcher’s individual responsibility?

In this thesis I draw four general conclusions. First, trust is still very much present in at least some biobanking settings, notably in Sweden, but possibly also internationally. Second, a morally relevant conception of trust entails that to be trustworthy, researchers must consider the normative expectations that people have of them, and renegotiate expectations that are mistaken. Third, this conception differs from “public trust” assessed through surveys. The main use of the latter is to legitimate policy, not to identify moral duties. Fourth, in spite of ethics review, guidelines and informed consent procedures, ethical issues will always arise during the course of a research project. Researchers can therefore never avoid their individual moral responsibility. Ensuring that one is adequately trusted is one step towards conducting morally acceptable research.

Study I indicates that few Swedes refuse storage of samples in healthcare-associated biobanks and their use in research. Study II suggests that people are somewhat more willing to donate samples than surveys indicate, especially when approached face-to-face by health care personnel. Relationships of trust might thus be important in people’s decision-making. Study III investigates trust as a moral concept. The trustee is often in a unique position to determine what the other’s trust amounts to. When it is mistaken, the trustee has an obligation to counteract it, compensate for it, or renegotiate the expectations that cannot be met. In Study IV, I critique the feasibility of guaranteeing the trustworthiness of the research apparatus through formal measures such as ethics review and guidelines. Not only are there limitations of such measures to consider. They also risk blinding researchers to ethical issues that are not covered by the rules, fostering moral complacency, and alienating researchers to ethics.

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2013. , 142 p.
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 861
Keyword [en]
Biobank, biobank research, bioethics, biobank ethics, research ethics, trust, trustworthiness, moral responsibility, informed consent, ethics review, ethics guidelines
National Category
Bioethics
Research subject
Bioethics
Identifiers
URN: urn:nbn:se:uu:diva-192295ISBN: 978-91-554-8585-6 (print)OAI: oai:DiVA.org:uu-192295DiVA: diva2:599855
Public defence
2013-03-09, Auditorium Minus, Museum Gustavianum, Akademigatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Available from: 2013-02-15 Created: 2013-01-17 Last updated: 2013-04-02
List of papers
1. Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study
Open this publication in new window or tab >>Patients' refusal to consent to storage and use of samples in Swedish biobanks: cross sectional study
2008 (English)In: BMJ. British Medical Journal (International Ed.), ISSN 0959-8146, E-ISSN 0959-535X, Vol. 337, no 7663, a345- p.Article in journal (Refereed) Published
Abstract [en]

Objectives

To estimate how many people object to storage of biological samples collected in health care in Sweden and to their use in research and how many withdraw previous consent.

Design

Cross sectional study of register data.

Setting

Biobanks used in Swedish health care, 2005-6.

Population

Data on refusal to consent were obtained for 1.4 million biobank samples per year from 20 of 21 counties.

Main outcome measures

Rates of preliminary refusal to consent, confirmed refusal, and withdrawal of consent.

Results

Patients refused consent to either storage or use of their samples in about 1 in 690 cases, about 1 in 1600 confirmed their decision by completing a dissent form. Rather than having the samples destroyed, about 1 in 6200 patients wanted to restrict their use. Of those who had previously consented, about 1 in 19 000 withdrew their consent.

Conclusions

Refusal to consent to biobank research in Sweden is rare, and the interests of individuals and research interests need not be at odds. The Swedish healthcare organisation is currently obliged to obtain either consent or refusal to each potential use of each sample taken, and tack of consent to research is used as the default position. A system of presumed consent with straightforward opt out;would correspond with people's attitudes, as expressed in their actions, towards biobank research.

Keyword
Cross-Sectional Studies, Female, Humans, Informed Consent, Male, Refusal to Participate, Sweden, Tissue Banks, Tissue and Organ Procurement
National Category
Medical and Health Sciences
Identifiers
urn:nbn:se:uu:diva-17702 (URN)10.1136/bmj.a345 (DOI)000258273000041 ()18617496 (PubMedID)
Available from: 2008-12-16 Created: 2008-12-16 Last updated: 2017-12-08
2. Hypothetical and factual willingness to participate in biobank research
Open this publication in new window or tab >>Hypothetical and factual willingness to participate in biobank research
Show others...
2010 (English)In: European Journal of Human Genetics, ISSN 1018-4813, E-ISSN 1476-5438, Vol. 18, 1261-1264 p.Article in journal (Refereed) Published
Abstract [en]

In the debate on biobank regulation, arguments often draw upon findings in surveys on public attitudes. However, surveys on willingness to participate in research may not always predict actual participation rates. We compared hypothetical willingness as estimated in 11 surveys conducted in Sweden, Iceland, United Kingdom, Ireland, United States and Singapore to factual participation rates in 12 biobank studies. Studies were matched by country and approximate time frame. Of 22 pairwise comparisons, 12 suggest that factual willingness to participate in biobank research is greater than hypothetical, six indicate the converse relationship, and four are inconclusive. Factual donors, in particular when recruited in health care or otherwise face-to-face with the researcher, are possibly motivated by factors that are less influential in a hypothetical context, such as altruism, trust, and sense of duty. The value of surveys in assessing factual willingness may thus be limited.

Place, publisher, year, edition, pages
Nature Publishing Group, 2010
Keyword
biobanks, tissue banks, genetic databases, public attitudes, trust, public surveys
National Category
Medical and Health Sciences
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-129210 (URN)10.1038/ejhg.2010.106 (DOI)000283314700016 ()
Projects
Autonomy and trust in biobank research
Available from: 2010-08-11 Created: 2010-08-09 Last updated: 2017-12-12Bibliographically approved
3. Adequate trust avails, mistaken trust matters: On the moral responsibility of doctors as proxies for patients' trust in biobank research
Open this publication in new window or tab >>Adequate trust avails, mistaken trust matters: On the moral responsibility of doctors as proxies for patients' trust in biobank research
2013 (English)In: Bioethics, ISSN 0269-9702, E-ISSN 1467-8519, Vol. 27, no 9, 485-492 p.Article in journal (Refereed) Published
Abstract [en]

In Sweden, most patients are recruited into biobank research by non-researcher doctors. Patients’ trust in doctors may therefore be important to their willingness to participate. We suggest a model of trust that makes sense of such transitions of trust between domains and distinguishes adequate trust from mistaken trust. The unique position of doctors implies, we argue, a Kantian imperfect duty to compensate for patients’ mistaken trust. There are at least three kinds of mistaken trust, each of which requires a different set of countermeasures. First, trust is mistaken when necessary competence is lacking; the competence must be developed or the illusion dispelled. Second, trust is irrational whenever the patient is mistaken about his actual reasons for trusting. Care must therefore be taken to support the patient’s reasoning and moral agency. Third, some patients inappropriately trust doctors to recommend only research that will benefit them directly. Such trust should be counteracted by nurturing a culture where patients expect to be asked occasionally to contribute to the common good.

Keyword
biobank research, doctor-patient relationship, trust, therapeutic misconception
National Category
Medical and Health Sciences
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-189860 (URN)10.1111/j.1467-8519.2012.01977.x (DOI)000325867600003 ()
Projects
Trust in biobank research
Available from: 2013-01-04 Created: 2013-01-04 Last updated: 2017-12-06
4. Making researchers moral: Why institutionalised distrust might not work
Open this publication in new window or tab >>Making researchers moral: Why institutionalised distrust might not work
(English)Manuscript (preprint) (Other academic)
Abstract [en]

Research ethics, once a platform for declaring intent, discussing moral issues and providing advice and guidance to researchers, has developed over time into an extra-legal regulatory system, complete with steering documents, overseeing bodies, and formal procedures. The process of institutionalising distrust is usually motivated by reference to past atrocities committed in the name of research and the need to secure public trust. This paper examines some limitations of this approach. First, past atrocities cannot provide the necessary justification unless institutionalised distrust is a necessary or efficient means to prevent future ones; and there are several reasons to doubt that this is the case. Second, the efficacy of ethics review in safeguarding morally acceptable research depends on the moral competence and integrity of individual researchers—the kinds of qualities that institutionalised distrust calls into question. Third, ethics guidelines cannot, as it is sometimes assumed, educate or guide researchers to moral behaviour unless they already have considerable capacity for moral judgment. Fourth, institutionalised distrust is a potential threat to the moral competence and integrity of researchers by encouraging a blinkered view of ethical issues, inducing moral heteronomy through incentives, and alienating them to research ethics as a pursuable activity. We conclude that the moral problem posed by inappropriate short-term behaviour on behalf of researchers is dwarfed by the potential long-term consequences of allowing their moral competence to deteriorate. Measures must therefore be taken to ensure that researchers are equipped to take their individual responsibility and not obstructed from doing so.

Keyword
research ethics; moral responsibility; ethics review; ethics guidelines; institutionalised distrust; scientific misconduct
National Category
Bioethics
Research subject
Bioethics
Identifiers
urn:nbn:se:uu:diva-192211 (URN)
Available from: 2013-01-17 Created: 2013-01-17 Last updated: 2013-02-21

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